what were the clues?
i have three kids, and with each pregnancy my health deteriorated a little bit more. by the time i had my third child, i was in crisis. i had to step back from my business — in my family we call it “the pause.” i was an active parent, on the pta, and i ran my own search firm. i would get sick, it would throw me for a loop, but then i would get better and just keep going, until my body said no more.
what did the crisis look like?
i try to avoid being in the hospital as much as i possibly can, but that year i had a lot of recurrent kidney infections that required iv antibiotics. sometimes i would have an infection that wouldn’t respond to antibiotics and the doctors would have to try something different. that summer, i’d had an antibiotic resistant infection, which is scary. i was too sick to soldier on. so, when i think about a crisis, it’s when i’m not able to power through or be an active mom to my kids, or to be an active employee in my business, or an active member of society. that to me is a crisis.
how did you finally get a diagnosis?
i got very lucky. i also have medullary sponge kidney, which is what was behind the recurrent kidney issues. if you think about your kidneys, they are a smooth organ; mine is shaped like a sponge. it’s got divots and that leads to recurrent kidney stones and infections. i was in and out of hospitals so much, finally, i got to the point where i knew something needed to change. i began to focus on the only thing i could control — my diet. i met with a dietitian who incidentally also had a job in genetics at mcmaster hospital, and once i described everything that had been going on, she immediately referred me to a geneticist, and said, “i think you’ve got eds.” that was the turning point for me.
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